Thursday, October 25, 2012

I've been following the events around Tony Attwood for a while, and I just found this post on Tumblr by Janna. With her permission, I'm posting it here, since I think it says very nicely what I think of the entire situation as well.

I’ve been at it for a bit now.
Still having trouble understanding everything this person is talking
about (have I mentioned before that taking Strattera for six months
decimated my reading comprehension as well as messing with my typing?)
but I’m trying to get through to them.

The post is here, if you want to see. I’m posting as karalianne, as per usual.
For those not up on this situation, a post was made to The Thinking
Person’s Guide to Autism blog, by an autistic person (who is very
successful by NT standards), who attended a session by Tony Attwood
while at an autism conference. During the session, Dr Attwood
impersonated autistic people in a fashion that was exaggerated and taken
as humorous by the allistics in the audience. Meanwhile, the autistic
person was offended by this portrayal.

Dr Attwood was later pointed to the post, and he wrote to the author
privately. In this e-mail, he explained humour to her and implied that
she doesn’t understand humour because she is autistic.

More to the point, Dr Attwood has been doing these portrayals for
several years, and many autistic people have asked him to stop. He
obviously has chosen to disregard the opinions and desires of the people
he supposedly cares about so much that his entire career has been spent
studying them.

There is an autistic person who is posting long “wall of text”
comments to the original post (they’re divided into paragraphs, but the
paragraphs are really long and use a lot of big words; my current
reading abilities don’t like this at all), supporting Dr Attwood’s
continued use of impersonation in the face of complaints.
Here are a few of the things I’ve said so far:
My first comment to the thread:

I am writing just a general response about Tony Attwood in general.He has written a bunch of books. He writes forewords a lot. He’s studied Asperger’s a lot. He has degrees and stuff. That is really cool, and it’s okay to like people who
have done stuff like that. It’s okay to agree with the things they say
and write if they are true for you.
It’s important to remember, though, that even the coolest people in
the world say and do really bad things sometimes. Saying or doing bad
things doesn’t necessarily make them bad people; a lot of the time, cool
people who do bad things are just misinformed or don’t realize that
those things are bad.
When cool people do bad things, other people need to tell them that
those things are bad. Truly cool people might get upset at first, but
after thinking about it they go, “Oh, wait, I get it. I won’t do that
anymore, then. I’m sorry I did that bad thing.” Less cool people don’t
stop doing the bad things. That doesn’t mean they aren’t still cool, and
it doesn’t mean they’re bad people, it just means that they’re still
doing bad things even though they’ve been asked not to. It’s okay to
still like people who do that, but it’s also okay to stop liking people
who do that. It’s also okay to criticize people who do that, because
they need to be criticized.
If I am standing on someone’s toes and I don’t mean to be standing on
their toes, I AM STILL STANDING ON THEIR TOES. I need to apologize and
stop standing on their toes. My intent doesn’t really matter except that
it was an accident. If I keep doing it to the same person, over and
over again, at some point that person is justified in concluding that I
am actually doing it on purpose and that I don’t actually care that
standing on their toes hurts them.
This article is posted publicly. Anybody can see it, read it, and
reply to it. Tony Attwood is perfectly able to do that here or at
Karla’s site, I’m sure.
(Note: I wrote this the way I wrote it because this is about the
level of complexity I’m capable of today. I’m not autistic, but ADHD
impacts my communication sometimes, too. So I’m not “talking down” to
anyone by using simplistic words and sentence structures, I’m writing
the way I’m able to think about this right now. Just so everyone knows.)

In response to “not everyone has time to peruse the internet”:

Public figures should always expect to be called out publicly. It’s part of being a public figure. In addition, it takes about two seconds to type
your name into Google and see what turns up. Once you skip to the third
page (getting past all the stuff he’s actually written himself), you
start seeing criticisms. I would assume Tony has an assistant who could
use some time each day to check for such things, make a list of URL’s,
and send them to him, with a short summary of each URL. Considering the fact that Tony has been spoken to
more than once about this sort of thing and continues to do it AND
defends it by saying that other people are okay with it is an indication
that private communication will do no good and public callings out are
now necessary to make it clear that this sort of behaviour is really Not
Okay. Like I said, you can still like him. I don’t see
why what he says about Asperger syndrome should be given more weight
than what people who actually HAVE AS say about it, but that’s me. I
don’t see why people who don’t have ADHD should be telling me how to
“fix” myself, either. *shrug*

About the e-mail Dr Attwood sent:

1. I can’t actually understand all of this right now, so I might come back later, but I will probably forget to do that. 2. Attwood has been approached by autistic people
in the past and asked not to tell these kinds of stories, because they
are offensive to autistic people. 3. He continues to tell these stories. Ergo, he does not actually care what autistic people want and need. 4. When responding to someone who has been
offended by something you have done or said, talking about their
perceptions is a way of putting it all on them. Basically, it is saying
“I didn’t mean to offend you; therefore, you should not be offended.
Since you are offended, it is obviously your fault that you are
offended.” 5. I know plenty of autistic MEN who are hilarious. My autistic friends are not all women. Nor do I know them all just online. 6. Intent is not magical in any way. Like I said,
if I’m standing on your foot without meaning to, I’m still standing on
your foot and that is not okay. I need to apologize, get off your foot,
and try not to stand on your foot again. Attwood has not done this.

About the difference between what Dr Attwood is doing and what autistic people themselves do sometimes:

Short note that autistic people poking fun at themselves/their
own disorder is VASTLY DIFFERENT from people NOT on the spectrum poking
fun at them/autism. I don’t like it when people who don’t have ADHD
say offhandedly “I’m so ADD today” because IT DOESN’T WORK THAT WAY. I
don’t like ti when people who don’t have ADHD make jokes about how I
take legalized speed, because THAT’S NOT WHAT I DO WHEN I TAKE MY
MEDICATION. I don’t like those memes that are going around right now
about trying to fall asleep and Old MacDonald Hey Macarena OR the really
old ones about squirrels or bikes (though I grudgingly allow that
people who HAVE ADHD have a right to use them if they think they are
funny or pertinent or something). I still don’t fully understand what the heck
you’re talking about for the most part, but I did understand the stuff I
just said and I know it pertains to some of what you wrote.

In response to something that was basically “he doesn’t intend
to respond, and anyway very few autistic people are statistically going
to be at these conferences”:

Regardless of intent. (INTENT DOES NOT MATTER) A person who has a particular disorder can say
things about their own disorder that it is insulting and inappropriate
for people who do not have that disorder to say. If I were giving a talk about ADHD, I would talk
about positives and negatives and describe my life and the lives of
other ADHDers who have given me permission to share their stories. And
it would be okay if me doing that made people laugh, because I would
certainly play my own stories for laughs if they were funny. However, if
a professional who does not have ADHD told funny stories about ADHDers
losing their keys every morning or something, I would find that
offensive. Someone who doesn’t have ADHD laughing about things that
happen to me on a regular basis, that are incredibly frustrating to deal
with, is degrading and offensive. In addition, doing this - even when no people with
the disorder are present - indicates a callous disregard for the people
who have the disorder. It also encourages other people to do the same
thing. Basically, IT DOESN’T MATTER IF SOMEONE IS THERE
TO BE OFFENDED, THERE ARE REPERCUSSIONS FOR SUCH BEHAVIOUR THAT WILL
AFFECT THEM ANYWAY.

Up here in Canada, we had our Thanksgiving back in October, so we're all getting ready for Christmas/Hanukkah/other winter holidays. I'm going to be very honest: I celebrate Christmas, so my default for the holiday season is Christmas. This doesn't mean that stuff I say cannot be used for other holidays, it's just a religious difference, use as need.

But I'm kinda using my own experiences for this, so I'm going to resort to my default of Christmas. Also, I'm mainly addressing parents in this post, but I'm certain that some of these pointers can be used for Autistics of all ages.

But yes, the winter holiday season is approaching, and it's a very busy, hectic and overwhelming time of year, full of all the things that set off Autistics and other highly sensitive individuals. The season is full of parties, religious events, meeting a lot of people and having relatives all crowd together, malls full of shoppers and noisy music, and regular family festivities.

From my own experiences, there's nothing really new in terms of needs and challenges, just that the time of year makes everything more chaotic and intense. Add in the excitement for a countdown, the anxiety of a lot of surprises, plus a lot of the goodies that get passed around, and it's no wonder that things get overwhelming. The trick is to manage the new sources of over-stimulation and stress while still participating in the holiday so that everyone can enjoy.

Social: The holidays are filled with meeting people, lots of relatives, crowded house, parties, and other social complications that can make the basics, such as manners for receiving presents, more difficult to remember and perform.

Please keep in this in mind when interacting with others, that even if you know an autistic that is capable of being more polite, the overwhelming pressure on their social skills (and other skills) may mean that they are functioning on a lower level than their norm. It may be taxing for them to remember simple Please and Thank Yous.

Be mindful of this, and be patient. Little reminders on manners are okay, but don't be too insistent, because this is a very hard time of year and keeping the stress levels as low as possible all around is a good idea.

At events where its available, explain your and/or your child's needs, find a time-out corner for breaks, be mindful but try not to freak out at little slip ups, and if you find the stress becoming too high, leave early. Understanding friends and family won't mind too much, and you can get back to the ones who do. There might be some grumpy faces, but catching the stress at "grumpy" is better than "meltdown", where pretty much anything can set off a meltdown. So be very mindful of the warnings signs.

And if you think that so many events is too taxing, skip them. Take a break and pace yourselves. Friends and family members may not totally understand or be happy about it, but you're taking care of both your autistic child, and/or yourself. You could have a relaxing night at home, everyone doing a relaxing activity, maybe do something special if you think everyone can handle it.

I know that there are events that you can't skip, like certain religious events, or that mandatory company party. And to be honest, some of those are, well, boring for kids, and overwhelming in general, especially if it's formal (see sensory below). But don't be afraid to find a babysitter and go, even if it's for a little while so that you can fill the "I attended" requirements.

As for babysitters, it's good to give them some information about autism, so they know, but don't expect them to be professional respite workers. Look for someone who is friendly and flexible, and maybe have them meet the kids a few days in advance, if it's a new babysitter, so that everyone knows each other and you can see whether they get along. My parents tried to keep the same few babysitters, so even if there was an emergency, my brother and I would know the babysitter.

Also, parents, don't be afraid to take the time to go off by yourselves and have a night together. Everyone needs a break every once in a while during the holidays.

Sensory:You probably could name quite a few sensory issues we Autistics have this time of year, as every thing becomes more intense, and we tend to react more because of that. I'm talking the crowds in mall, the rushing here and there, all the loud music and holiday jingles, strange and new foods, smells and textures, and winter clothes.

Again, a lot of it is the same issues each of us have, just more intense during the holiday season. As a result, it may be better to plan shopping trips for times when it's not so busy, or if that's not possible, to shorten the trips as to accommodate a lowered tolerance limit. It'll probably mean more trips, but it might also reduce overload.

Another sensory issue is foods, and there are many strange things to eat, with rather strange names. Don't worry about having your autistic test new foods; while it's certainly an opportunity to try new things, it may be more that they can handle during the holidays. If they consent to try a bite of something you think they might like, awesome. But be okay if they decide not to try it right now.

As for music, if you want to have it on, keep the volume down. If there's people over, well, you might want to just turn it off, because it becomes another source of noise.

The final issue I can think of for sensory is clothes. For me at least, this is big challenge during the winter months. I find that during winter, there's less moisture in the air, and so my skin becomes dry and more sensitive. This means even more sensitive to the feel of cloth, textures, and seams, especially after bathing when water has dehydrated my skin. Even sensory-soothing clothing can become irritants during this time of year.

To counter-act difficulties dressing due to this, I suggest bathing well in advance of events to give the skin time to hydrate and produce its own oils.

Also, in winter, fabrics are heavier, which is good for those who need more sensory input, but clothing contains more seams and restrictions of movement. Given the time of year, some articles of clothing are necessary to wear outside. So try to use the hat, mitts, scarves and other winter gear that your child seems able to wear the longest, but when possible, limit the amount of time they need to be wearing their gear.

As for the times where formal wear is required, it becomes a matter of how much your autistic can tolerate. Try to buy formal wear that can be worn for long periods of time, or else bring along a spare set of clothes, just in case. Otherwise, let your child wear what's comfortable and looks good.

Schedule:Another source of distress during the holidays is the deviancy from our regular schedules. Understandably, there's a lot of things to keep track of, and it can get very busy and overwhelming. What I think is key is keeping as much of the regular schedule, with more cool-down periods. The normalcy of it will be grounding and calming, reassuring your autistic that things are still under control, and it helps transitioning between the holiday season and the non-holiday season.

For all the different events and activities, if possible and when appropriate, try to include your autistic in the decision making process. This will help them to be involved and be more informed about what's happening. This also gives them the opportunity to express what they'd like to do and experience the holiday better.

I also suggest to try to do the same things year after year; this makes the holiday a part of the yearly schedule, and as time goes on, may make the holidays easier as your autistic has a better idea of what to expect.

What I find is that after the holidays, or any big and draining events, I have a period of transition and adjustment to get back into the regular schedule. Sometimes this includes period where I regress in skills, tolerance and energy as I am recovering from the event, especially when I have been unable to maintain my regular schedule and practice skills.

During this recovery period, be patient and mindful that your autistic may be drained from the holiday, get back into the regular schedule as soon as possible, and allow them to have more quiet time periods. For me, to recover from a weekend usually takes about a week, but it's different for everyone.

As well as what I have above, I asked my mother for some tips and advice on handling the holidays. After all, she did raise myself and my brother, both of us with a wide range of difficulties for this time of year. So, from my mother:

1) Don't do too much on any one day; usually one event per day is enough.

2) Each morning, share that day's schedule with the kids, and only that day's schedule. Don't overwhelm them with future days and activities; stay day by day. Also have it that the kid can carry it along and refer to it.

3) Keep clothes soft and comfortable.

4) Have quiet time, and let them know that it's quiet time, so that they can relax properly.

5) For children who have a hard time staying at the table, have a candle on the table. Makes meal times more special, and keep their attention so they don't leave. Keep a plate under the table, and watch for fingers that start playing with wax. (Candles are a two-edged sword; can keep kid at table, but they may want to play with the melted wax)

6) Always serve some of the kid's favourite foods at every meal, so that if they don't like the big meal they at least have something to eat.

7) Make sure that relatives and guests know the kid's needs.

8) Limit the amount of people coming over and in the house at any given time.

9) Have a safe place for your kid to withdraw.

10) If you have a large family gathering, rent a hall. But make sure to keep a safe corner.

11) Don't force the kid to do greetings and farewells; it's too much commotion in the front hall.

12) Allow your kid to choose toys to hide away that they do not have to share, but at the same time, have your kid pick toys that they do have to share with other children.

13) If playing music in the background, have calm music and be careful of the volume.

14) When opening gifts, clean up the boxes and wrappers as you go, so that it's not too chaotic. After opening, take gifts to each person's respected places to keep the central space calm.

15) If the kid like puzzles, create a puzzle corner where they can interact with others one-on-one as they work on a puzzle.

16) Find some way that the child can contribute and make the holiday their own. Give them suggestions and work together on whatever the child chooses, such as help decorate, help making food, setting the table, putting stamps on and licking shut Christmas card envelops, etc

If you have any questions about this list, or you think I've missed something, feel free to ask and comment.

Monday, October 8, 2012

It's Thanksgiving here in Canada, a day where we ignore any references to some guy named Columbus (not our history) and simply give thanks for another harvest and the bounty that the year has brought us.

So what am I thankful for?

Well, I'm thankful for the donations that have come in towards my iPad; it will be a tremendous aid in my studies and I thank the community for their support thus far.

I'm thankful I went to IMFAR this year; not only did I learn a lot, but I got to meet some great friends and we had a fun time.

I'm thankful for technology, that has been able to connect me to people all over the world and allowed me to take classes with more ease than ever before.

I am thankful for the support systems that work, for they are invaluable. There might be much that needs work so that they are the common, not the exception, but I am thankful for when they have been there and able to provide for me and others.

I am thankful for communities and friends who accept me as I am, who embrace me as one of their own, and who welcome me. A lot of these share at least some of the same interests and loves, and it always feels like coming home.

I am thankful for my friends, family, and loved ones, whom provide companionship and support, as I do the same for them.